toss & ripple: If I were to write an update, of sorts...

If I were to write an update, of sorts, about where I now function/exist/await regarding my health, what would I share?

Life is really hard.

I have plateaued.

Is this where I will stay?

Will there be more movement?

There is always movement, either toward improvement or toward death.

The movement-toward-death is inevitable for all living creatures, unless there is a Christian Rapture or Hope at which time humans who are alive at the event will be given new bodies and will meet the Lord in the air. [I capitalize "rapture" and "hope" to delineate the event from the typical usage of those words.]

(My meandering thoughts at this moment, are they a type of avoidance as I endeavor to put into words my current, complex, often-overwhelming health status?)

Perhaps it'd be easier for me (but not necessarily any readers) to approximate a number on a scale. The premise for my scale is "Week 12" of my previous epidural cycle. Because I haven't received an epidural since 4/14/22, I live in a continuous Week 12 now.

I used to receive epidurals every 12 weeks. With every cycle the final week was always the worst. It got so bad over the years that it is hard to describe the physical, mental, and emotional symptoms. Indescribable physical weakness, brain mud, despair. Laced within those are the overwhelming fatigue (physical, mental, emotional and neurological) and a widespread low-level pain through all my limbs, extremities, and back. Not to mention dizziness, mini-migraines, tummy-yuck, and whatever-else.

So, on a scale of 0 to 12, with 12 being the worst, I hover these days (mostly) around an 8 or 9 and maybe an occasional 7 or 10. Which is far from "well" but, considering the circumstances, is notable. One of those circumstances is chronic insomnia for a year, most weeks getting around 20 to 25 hours of sleep. That is not calculated with a device, but rather my own record-keeping. So I may be getting a few hours more, but not many and not deep sleep. That I can function as well as I do, is also notable.

So in comparing (as well as I can; some objective, some subjective) with my previous Week 12s:

My symptoms are a bit different; it's like they are more concrete and less diffuse.

I have described my current pain as being harder, starker than previously...like a 'hard' leafless tree in winter instead of a 'soft' leafy tree in summer. It's not necessarily "worse" or "better," but different.

The weakness through my limbs is not as bad; I can now (very slowly) lift my right arm using my bicep, whereas it would otherwise be non-liftable. It takes extra effort to lift it, and I can't move it quickly. I can't move any of my body quickly; shooting pain and lameness will let me know immediately if I have done so.

My brain is sometimes almost a blank-feeling, like a fuzzy, black nothing, like my brain cells are dying, like they have nothing to grasp. But that is due more to insomnia than polyradiculitis-fatigue. The insomnia invokes feelings of madness and could drive one mad if allowed to do so, or if going too long without a reprieve.

Emotionally, anxiety has been out the roof at times. A type of paranoia not of a person or entity being after me, but rather a threat awaiting me. This extreme anxiety stems from the insomnia, not that other life circumstances and patterns are not involved. In the past month, I have had seven consecutive nights of around 4 hours of deep sleep. During those times, the anxiety was greatly reduced. Thus, I surmise that the insomnia is a (the) major trigger for the extreme anxiety. (I'm trying a new sleep medication which takes weeks to start working, so maybe it is starting to work...but the verdict is not yet known. Right now, "getting Carol to sleep" is the focused priority.)

That's all I have in me now, as far as trying to share about symptom comparisons. Bottom line is that I seem to stay around 8 or 9 on the scale. Not as bad as 12, but still...exhausting and limiting.

I had to give up trying to ride my bike outside. I did get in 3 good rides this year, in March and April, but had to stop. (My last ride prior to March 2023 was July 30, 2022.) The rides didn't bring symptom-relief, and they exhausted an already-exhausted me. Plus, they didn't help my sleep but rather seemed to have an opposite effect. I am able to ride my indoor bike, usually 3 to 4 days a week for 20 to 30 minutes each time; often temporary relief follows.

I endeavor to walk outside each day, somewhere between .25 and 1.1 miles depending on how I'm doing. I have to use my trekking poles when walking outside the home. I wear my back brace and wrist braces inside and outside. I'm thankful I'm still mobile.

That's all I have in me now, as far as trying to describe a couple things I do to keep my body working.

Nature is still one of my main helps. And music.

And nature. And guided meditations. (Thank you Insight Timer. That's a plug.)

And music. And tonglen practice/prayer.

And nature. And good relationships with my wellness team.

And music. And the loving aid from my spouse.

And nature. And writing my shorts.

And music. And reading stories of real people overcoming, or at the very least making the best of, debilitating circumstances within webs of complexity.

And too many to lists...

Did I mention nature? :)